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WPI Finds High Levels of Retrovirus in ME/CFS Patients

Discussion in 'XMRV Research and Replication Studies' started by Cort, Oct 8, 2009.

  1. Dreambirdie

    Dreambirdie work in progress

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    This definitely needs more investigation.

    Ignorance enshrined goes with the territory of the CDC, unfortunately for all of us. And how little we know about it is thanks to our cowardly media.

    I heard about the Baxter debacle from activists, who send me their newsletter. I wouldn't have otherwise.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    A couple of comments: I excitedly shared this news with a couple of old friends who are not sick, and was amazed at their reactions--mostly along the lines of, "Oh, that is interesting," then subject change. I was kinda floored at how "ho hum" it seemed to them. Did any others get this reaction?

    And re: Lyme, there is a Lyme conference this weekend in Seattle with Klinghardt as one of the primary presenters. Looking at the list of speakers, I think they will be in the loop with this and hopefully it will be discussed. One of the speakers has recently become my doctor and I will see him on the 19th and grill him on the response to XMRV at this conference.

    I too was on an emotional rollercoaster with this--excitement, elation, and also tears. I really hope more news rolls out soon and we don't have to wait, and wait, and wait, with our questions.

    Sushi
  3. Mark K

    Mark K

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  4. Dreambirdie

    Dreambirdie work in progress

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    Yes Sushi--I also got pretty lukewarm-ish reactions, even from a close friend, which REALLY surprised me. :confused:
  5. Finch

    Finch Down With the Sickness

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    Reactions of Others

    Me too, Sushi. I told two people, and neither seemed terribly responsive. My husband is mildly interested but not coming up with lots of questions when I bring up the subject like I would have expected. That's why I'm waiting for someone to tell me before I spread it much more.

    I also talked about it on Cpnhelp.org, where someone else had posted the news first. There's not a lot of response there, and some of it is rather "so what?" One kind of seemed like I was attacking our protocol there, which of course I wasn't. It's still the only answer for me right now!
  6. kamina

    kamina Retired account

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  7. _Kim_

    _Kim_ Guest

  8. Dainty

    Dainty Senior Member

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    This news is what pushed me to finally join this forum, which I've known about for a while.

    I've also noticed the "ho hum" response by those without direct experience with CFS. It's hard to communicate just how big this news is, but hopefully as they learn more about it it'll keep making news and eventually the public will perk up and take notice.

    It sure was something to go to Google news and see this story on the very front page as one of their top three stories at the time. How surreal!
  9. Wayne

    Wayne Senior Member

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    Hi Sushi,

    Truly remarkable information! Thanks much for posting this. With all the discussion about trying anti-retroviral drugs (with its complexity, cost and potential side effects), I would think trials with LDN would be much more in order as somewhat of a starting point. Seems like LDN is low-cost, simple, and has minimal side effects. Plus, there are some who are already getting really good results after just a short period of time, such as yourself.

    I've been following your posts on the LDN thread, and have been slowly bringing it from my "back burner" to my "front burner". With this new information, I'm looking at making it "front and center!". It just seems like such a logical place to start. Plus, you don't have to wait to get test for XMRV before getting started.

    A couple of thoughts I've had: Like Jenbooks, I can't help but wonder if vaccinations have played a role in this unfolding scenario. I've long suspected they played a role for me, and I can't shake that feeling as I read these discussions about transmissions.

    Another thought, which might explain some of the transmission possibilities: What if XMRV is a virus that is vulnerable and easily handled by healthy immune systems, but once it gets a foothold, becomes much more virulent. This could explain why so many other factors like methylation, heavy metals, periods of extreme stress, genetics, etc., which can impact the immune system, can be such factors in XMRV infection. Just a thought.

    Hi Finch, I appreciated your greeting! Hi everyone else! I've really appreciated all your comments. Great stuff! Hi Bluebird, big welcome to this forum! :) Great to see you here. Will look forward to more of your posts.

    Best to All, Wayne
  10. Dreambirdie

    Dreambirdie work in progress

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    Hi Wayne--

    This is my thought too. It would also explain the various subsets and degrees of severity.
  11. rebecca1995

    rebecca1995 Apple, anyone?

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    The NYT article on XMRV and CFS is the third most emailed right now! Yay!

    Also, my friend's husband, who has an MD/PhD and has never much commented on my illness, emailed me a story on it, noting the "very strong association". So, at least some are paying attention!

    But if the majority of the public is "ho-hum" about it, as others are finding, that could work in our favor too. As Sarah and others have expressed earlier, I've been worried about possible stigma if it's found that XMRV can be sexually transmitted. People generally don't pass moral judgment if you get a tick-bite, but it's a different story with STDs. So I have no problem keeping the transmission issue under wraps until we have a LOT more information about this (and I find out if I even have it).
  12. Quilp

    Quilp Senior Member

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    On a lighter note, when this news came out about the virus here in the UK, i noticed a marked change in my friends reaction. I happened to sneeze and they immediately draped themselves in tissues, blankets, napkins, anything they could get their hands on ! I could get used to this......:)

    Oh and hello from this newbie here in the UK

    P.S thanks Cort for all your hard work and help. I have followed the site for a while and heard your name quoted on other boards. Today i finally joined. You deserve all the praise in the world for this site.

    Kind regards, Mark
  13. Dainty

    Dainty Senior Member

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    Personally, I don't see how it could mainly be an STD, due to the number of those who are celibate and have never received a blood transfusion who assumably have it.
  14. Min

    Min Senior Member

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  15. jackie

    jackie Senior Member

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    Hi to all the other "fried" people here! I too have told a few people and was a bit surprised by the reaction I got.

    At first my husband (who is knowledgeable and ALWAYS 100% supportive) tried to look brightly excited, happy for "me" as though this might be the THE answer to my situation.

    I reminded him that the implications of a discovery like this go far beyond those of us with me/cfs/lyme/mcs etc. To find a new (transmissible to humans) retrovirus - when there have only been 3 is monumental and staggering to the mind.

    The bigger picture started to dawn on both of us and we wondered (if I eventually test positive for the virus) what that means to my long-term high-dose antiviral protocol.

    I can't titrate down (I've already tried several times over the years) and I can only imagine the results if I stopped entirely and was started on a RETROantiviral?

    Besides which, I was originally told I would be on at least a maintenance dosage for the rest of my life. I'm pretty sure that with HIV/AIDS once you start a retroviral IT'S for life. Possibly this retrovirus treatment would be different? Time will tell.

    I wonder about all of those here on different protocols being switched to alternate methods. I think about a good portion of the nation on retrovirals or something similar. And of course I'm thinking of my family.

    So, yes, this is BIG news. And I'm still waiting for the BIG reaction from others!

    I'm also shocked at the lack of media coverage in my LOCAL newspaper! Anybody else notice this in their area? I live in a small, urban Coastal/Harbor So. California town (about 60,000 people) but we are only 30 minutes from Los Angeles and not one word form the local papers!

    Not only that, but because we have LNG Terminals and the Shipping lanes and Docks (Port of Los Angeles) our environment is pretty toxic anyway.

    My dentist informed me recently that we have very high cancer rates (in particular Thyroid, Leukemia, Lymphomas - the very ones that appear to be such a threat) in my town.

    I already knew that, as I've had 5 family members with cancer (1 death), lost 3 friends to it, and my husband has lost 6 friends...all in this community!

    I'm certainly not panicking (not even really "worried" - just doing some serious thinking) as I've lived this way for most of my life. But the rest of the world does need to sit up and pay attention now.

    I'm not an Activist (unfortunately), but I guess it's time for a letter to my Editor, at the very least!

    reminding myself to wind back down.....jackie
  16. bertiedog

    bertiedog Senior Member

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    Slightly Confused

    Hi all

    I am also very excited by the news having had very poor health since 1979. I rewatched Dan Peterson's presentation in London during May this year on the DVD from InvestInMe this morning, I believe he supplied patients for Judy M to study and he said he had over 25 years of dealing with patients suffering with ME/CFS.

    On the Q and A session at the end he was asked how many of his patients got some improvement by the first thing that he does with all patients which is just changing the diet, dealing with yeasts, bacteria etc to stop a leaky gut and with the use of probiotics. His answer was around 50%. When asked how many of his patients had demonstrated viral problems he said 15% and this is after testing all his ME/CFS patients.

    Now he obviously knew about the latest research from Nevada because he is part of the new Institute and works closed with Judy M but his findings suggest only 15% of patients were showing up with the sort of problem now identified.

    I think the reason might be that in this latest study Judy M was only using patients who were very sick and not patients like myself who can have a sort of half life which is rather a curtailed life with many flares of real illness.

    If this is the case then the news article might be slightly misleading because maybe the new retrovirus is only the case for the severely affected. I know Dan Peterson has stressed about subsets many times so maybe there is still lots to find out.

    I have improved hugely with adrenal and thyroid support and have worked on methylation, take lots of good supplements but still get many very nasty viruses which usually turn into horrible throat infections so there is definitely something not right with my IS. I also can never walk for very long before the fatigue hits me. However I am usually over it the next day and I now sleep well most nights which is something very new.

    A final point is that I have proven heavy metal poisoning and so have many other ME/CFS patients that I have arranged Genova testing for and also I know of many others who have testss through Dr Myhill and also have this problem so this is another area that we know is a huge problem for many patients.

    Pam
  17. Dreambirdie

    Dreambirdie work in progress

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    Request to DR. OZ

    I posted this on its own thread, but thought I'd post it here too--as this is where the ACTION is. ;)

    Hi Everybody--

    I sent off an email to Dr Oz this morning, requesting that he do a show about CFS/ME, given the recent research findings.

    I'm hoping that some other people here might consider sending him one too. If he gets multiple letters, maybe he will be more motivated to take it on.
    Wouldn't that be great!

    Here's the link:
    http://www.doctoroz.com/plugger?tid=21
  18. hvs

    hvs Senior Member

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    Many folks will have had this since infancy, Dainty. It will probably reveal itself to be shared within families. Those who are genetically predisposed and experience an inciting infection or toxic exposure or some such will have the latent virus turn into XAND (xmrv-associated neuro-immune disorder). Not everyone who has xmrv will have XAND, but everyone who has XAND (distinct, now, from CFS) will have xmrv.
  19. _Kim_

    _Kim_ Guest

    Golden Girls 1989 Sick and Tired

    I just found this 2-part episode where Dorothy is diagnosed with CFS. I can't believe that this was made 20 years ago, yet so little has changed regarding doctor's attitudes towards CFS. Way to go Bea Arthur! This was both touching and funny.

    Sophia to doctor who thinks Dorothy's symptoms are psychological: Functional? Mental? Well, let me tell you something Mr. 100% tip-top mental: my daughter may be no spring chicken and her jaw might crack when she chews and she may have noticible trouble digesting raw vegetables, but one thing she's not is mental!

    Dr. Chang who finally made the dx: I think you are sick. I think you have something called Chronic Fatigue Syndrome. It's fairly recent, there are many theories about it, but most of us believe it's a virus. It just has not been identified yet....

    Dorothy: So I really have something REAL?!

    http://www.youtube.com/watch?v=BAEaDLZBjrY

    http://www.youtube.com/watch?v=SQ0IxUEt8GE
  20. Finch

    Finch Down With the Sickness

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    Dr. Oz

    Hey Dreambirdie - my husband emailed Dr. Oz about doing a CFS segment a couple of weeks ago, well before any of this news broke, so I guess he's already ahead of the game!

    He also emailed the Oprah show last year. No response from either, of course, but maybe some seeds can be planted.

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